Raising Children with Autism, Before the "Epidemic"

Marilyn Cox was at work when the telephone rang. Her son's elementary school was summoning her, right away. When she arrived, school employees met her at the door and escorted her to the principal's office. There, two doctors were waiting. Unbeknownst to her, they had examined her 5-year-old son, Brian.

Brian had just started school, already knowing how to read, do arithmetic, and even speak a little Spanish he learned from Sesame Street. These doctors told her Brian didn't belong there. Not in an ordinary kindergarten class, in an ordinary public school, in their corner of Missouri.

"'We recommend you put him in an institution and forget he was ever born,'" they told her. Her voice, with the steady and even vowel tones of the American Midwest, wavers slightly at the memory. "I said some bad things, turned, and slammed the door."

This was life in the 1970s, for a child with autism. U.S. law had only begun requiring all schools to educate students with disabilities. State-run institutions – large facilities where people with disabilities lived – still existed for children who were traveling a different developmental path to adulthood. Autism was a strange and foreign word to most doctors and teachers; it was sometimes confused with mental retardation, emotional disturbance, or childhood schizophrenia, to use the terms of that time.

In fact, Brian, born in 1971, would not be formally diagnosed with autism for another decade. Many of his generation, born before diagnoses began skyrocketing in the 1990s, lived largely in the shadows of educational, health care, and social systems that were not attuned to their needs. They and their parents trod lonely journeys, but their footprints paved the way for the many who would follow in the 21st Century. Here are a few of the stories of ordinary parents doing extraordinary things. The stories of adults with autism spectrum disorder will follow in a separate article.

Diagnosis Delayed

Brian was Marilyn's fourth child, and by the toddler years, she knew that his speech and social skills were not as developed as they should be. But his doctor, the same one who delivered him, was not particularly concerned. "He said, 'He's just got siblings 'round who do what he wants them to do.'" Brian was just being lazy, in other words.

Around the time Brian was ready to start school, his family moved to a different part of Missouri and Mrs. Cox took him to a new pediatrician. "By that time, Brian was talking quite a bit and reading all the posters on the doctor's wall. The doctor asked me if I had any concerns, and I told him I had."

After examining Brian, the doctor mentioned a word Mrs. Cox had never heard before – autism. It wasn't a diagnosis, just a word thrown out, almost discarded. Mrs. Cox asked for more information, but the doctor had none to give. Go find a book about it, he offered. "Where?" she asked. "He said, 'I don't know.'" That was the end of their autism conversation.

Beyond a Reasonable Doubt

In the 1970s, the diagnosis of autism had to be proved beyond a reasonable doubt.

As surprising as that may be, it may have been typical for that time, and that place. Autism was a difficult diagnosis to get, even if you could find a doctor trained in identifying the rare condition. Autism was first described only 28 years before Brian's birth, by child psychiatrist Leo Kanner in Baltimore. According to the book Autism Frontiers, "In the 1970s, the diagnosis of autism had to be proved beyond a reasonable doubt. Children with the diagnosis of autism had to meet the criteria of Kanner and be significantly impaired. Occasionally a child would receive the diagnosis of mental retardation and 'autistic features.' The operational diagnosis, however, was mental retardation."1 (Interestingly, Dr. Kanner did not insist on the presence of "mental retardation," now called intellectual disability. In fact, he stated that his patients with autism were "endowed with good cognitive potentialities."2)

Some time after that doctor's appointment, Mrs. Cox would get that terrible call summoning her to the principal's office, and she would hear about institutionalization. By and large, America began the decades-long process of de-institutionalizing people with disabilities in the 1970s.3 But in many places, including Missouri, children were still being sent to such places. Mrs. Cox would reject that suggestion, and insist on having her son educated in his local school. But his "special" education was anything but, by today's standards. Brian received no occupational therapy, no social skills training, and no behavioral therapy. There were no activity schedules or social stories to reduce anxiety about the unexpected or prevent a meltdown from stress.

Putting Autism Out of Sight

Parents were afraid to rock the boat.

Brian tried his best to take part in class despite a lack of support and understanding. If a classmate told him his birthday, Brian would tell him the day of the week he was born. Yet his savant-like calendar skills, memory, and reading ability did not win over his teachers. He had trouble conforming: staying quiet, still, and seated. The school's solution was to stick him in the corner, behind a partition, literally out of sight. This may seem shocking today, but the ink on the 1975 law requiring the education of "All Handicapped Children" was still wet when Brian began school. "Parents were afraid to rock the boat," she recalled.

Still, Mrs. Cox pushed to get a semblance of a special education plan drafted and followed. "It was a fight all the way through, especially elementary school. Junior High was a little better." At least he was treated with kindness in his classes for the "developmentally handicapped," as they were called. By the time he was in high school, Mrs. Cox was contacted by a doctor who had heard about Brian, and whose own son had a disability. He told her about a psychologist in Illinois, and she took Brian there two or three times a week, driving more than an hour each way.

The psychologist wanted Brian tested for autism, but he had not been trained to do so. He sent Brian to the Menninger Foundation, a psychiatry practice in Topeka, Kansas. There, Brian was formally diagnosed with autism. He was 16.

By this time, in the 1980s, the definition of autism had become less rigid, although it was still stricter than it is today. Autism was believed to affect only 1 in 10,000 people,4 and most Americans had never heard of it. The year of Brian's diagnosis, American psychiatrists updated their diagnostic manual to include "atypical autism" or Pervasive Developmental Disorder Not Otherwise Specified, for people who didn't quite meet autism's stricter criteria.3

For the Cox family, "the diagnosis gave us a lot of insight into what was going on with him," Mrs. Cox said. But it didn't change much else. It did not help Brian get a high school education better suited to his needs, not even when his psychologist attended school meetings. He and his family still experienced some social isolation, at school events and church, where Brian's behavior was misunderstood. For a time, Brian was even barred from riding the school bus. Mrs. Cox was not given a reason, and she drove him every day.

The day before his high school graduation in 1989, she got another call from the school, this one as shocking as the first one a dozen years before. Although Brian had earned a diploma, bought a class ring, and picked up his cap and gown, the school did not want him to walk across the stage at the graduation ceremony. Mrs. Cox told the school firmly, as firmly as she did the day those doctors told her institutionalize Brian, "He will be there, and he will walk." And he did.

James' story: Battling Myths about Autism

Back then autism was so rare that every place I took him, they had never heard of autism.

James Sweetney arrived with much anticipation in 1980. His older brother had died of Sudden Infant Death Syndrome, and his parents watched James with great vigilance. He was talking in phrases, such as "Jimmy eat!", but at 18 months, he suffered a high fever, one of many infections.

"When the fever broke, I thought he was deaf because he had stopped talking," recalled his mother, Jacqueline Sweetney, of Maryland. She watched as her son lost eye contact and pulled more deeply into himself. Instead of exploring his world, he rarely moved. At first James' doctor told her not to worry; James would talk again, he said. But he never did, and his family's concerns multiplied.

When he was three, Mrs. Sweetney took him to a children's hospital, where he was diagnosed with autism and intellectual disability. "They decided he needed medication to help him interact. He went from the zombie stage to the hyperactive stage. Autism was considered a mental illness, and they treated it with psychiatric drugs – and it was not good at all," she said. One drug made him violent, but another turned him back into a "zombie."

Back then, many health care providers did not view autism as a neurodevelopmental disorder. In an article published in 1984, two pediatricians at Kennedy Krieger Institute tried to expose some myths about autism, including "Myth #1: Autism is an emotional disorder" and "Myth #2: Autistic children become schizophrenic adults."5

Still, those myths persisted. For the Sweetneys, people's fear of autistic behaviors, and confusion about mental illness, led to traumatic moments in doctor's offices and hospitals. "Back then autism was so rare that every place I took him, they had never heard of autism," Mrs. Sweetney said. "When he was a child in the hospital, they used to handcuff him to the bed even though he was 47 pounds. They would station a guard next to the bed because they were scared of him."

One doctor encouraged Mrs. Sweetney to consider a vasectomy for James; he was 7 years old at the time. "He said to me, 'He's handicapped, and we wouldn't want him to reproduce.' So I said to the doctor, 'Are you married? Because I wouldn't want you to reproduce, either.'"

James developed unusual eating habits, rarely slept, and had severe tantrums. After witnessing one such tantrum, his shocked psychiatrist admitted him to a hospital. There, doctors discovered a medical problem affecting James' behavior: he was having seizures throughout the day from epilepsy.

Is it autism, or something else?

He didn't become autistic yesterday. Why is he all of a sudden having these problems?

Later, in his teen years, James became violent, his mother recalled. "His psychiatrist and primary care provider told me it was just the autism, and they needed to institutionalize him. I said, 'He didn't become autistic yesterday. Why is he all of a sudden having these problems?' They said institutionalization is a final step after you've tried everything else."

Jacqueline was not ready to quit; she had to speak for her son who could not. She pleaded with another hospital to take him right away. During a stay at Kennedy Krieger Institute, doctors discovered he had Crohn's Disease, a chronic inflammation of his gastrointestinal tract. Pain from medical conditions can cause extreme behavior, particularly in people who cannot otherwise communicate. A 2014 article in a medical journal urges doctors to treat a severe change in behavior as "the canary in the coal mine" alerting them to a possible medical problem affecting a patient with autism.6

Long before that advice appeared in a medical journal, Mrs. Sweetney instinctively knew: "If my son becomes aggressive for no apparent reason, there's something medically going on."

And now: The Cox and Sweetney families

Marilyn Cox is in her fifth decade of working for better autism services in Missouri, most recently as a member of the Missouri Parent Advisory Committee on Autism.

After his graduation ceremony, Brian Cox attended a university for one semester. He moved to a residential program in Pennsylvania, since nothing similar existed in his home state. He later returned to southeast Missouri, where autism services became available in the 1990s. As an adult, Mr. Cox has had music therapy and social skills training; his mother wishes those had been available during his childhood. Now 46, he works at a fast-food restaurant and plays classical music on the piano in his spare time. "His life has been better since he's gotten help," she said.

He also tried living in a group home and independent supported living facility, but they weren't a good fit, Mrs. Cox said. Staff took advantage of him financially, she said, and he moved back home with his parents, who now are in their 70s. "I know he wants his own place," Mrs. Cox said. "But he can't drive, and he has to have support staff." Her wildest dream for the future? "I've been playing the Powerball [lottery] so I can win enough money to build an assisted living community for people like Brian, where they have common areas and apartments. I just think that’s the answer."

Left Behind?

Like Mr. Cox, James Sweetney, who is now 37, still lives at home. In his case, his family wants to keep a close eye on his medical conditions, which include epilepsy, Crohn's, hypertension, diabetes, and asthma. His mother authored a book about her parenting experiences, Sadness, Laughter and Hope: Autism Through a Mother’s Eyes.

Children born with autism today face a dramatically different world than the one Mr. Cox and Mr. Sweetney did three to four decades ago. At the very least, school districts, medical offices, politicians, celebrities, and average people are aware of autism, which now affects 1 in 68 children.

Autism spectrum disorder, as it's now called, includes not only PDD-NOS, the diagnosis added to the psychiatric manual in 1987, but also Asperger's Syndrome, a very high-functioning form of autism added in 1994. Those changes, along with a better understanding of autism's core features, expanded the number of people who could be diagnosed. Many of them have milder forms of autism and are less likely to have intellectual disability.

Mrs. Sweetney, for one, wonders if the autism awareness movement of the 21st Century has left some people behind: those with more severe forms of the condition, and those who were born before early diagnosis, intervention, and evidence-based therapies became more available.

"People's concept of autism is kind of skewed toward the higher-functioning. People are under the impression that, with all the programs and advances in recent years, it's helped everyone." She sighed. "People look at autism as the kid who's got some behaviors, but he talks, or he uses a communication board. And that's not my life."

The Interactive Autism Network (IAN) wishes to thank Mrs. Cox, Mrs. Sweetney, and other participants in IAN Research for their contributions to this article. The stories of adults with ASD, as told by adults with ASD, will follow in a companion article.